Newbie

Discussion in 'Homebound/Bedbound' started by Bet1941, Dec 31, 2014.

  1. Bet1941

    Bet1941 Member

    I first want to say Hello and Happy New year
    I was doing a search to see if becoming bed bound and home bound part of Fibro/CFS also arthritis.
    I was aware of my fibro about 8 yrs ago. Doc put me on Lyrica. Before that I told my husband , Mike "if I was not a Christian there would be no tomorrow "
    I do feel looking back I have had fibro longer than the 8 yrs
    I should mention I am 73.
    Fibro seems to progress and here I am with my iPad in bed looking for answers. I guess I tend to be anemic. I almost went into heart failure my Doc said. Had to get blood transfusion. Well that is my story. I am worried where will this go from here I can hardly do anything.
    Hugs to all,Betty
  2. rockgor

    rockgor Well-Known Member

    Hi Betty

    Welcome to the board. Let me give you a quick tour. If you click on "Forums" at the top
    of the page, you can see the table of contents for the different boards. The porch, where
    "The Porchlight is On" is a thread with no topic. Folks just drop by and talk about what
    is going on with them. A good place to chat about kids, relatives, pets, TV shows, movies,
    books, old music, new recipes, pet peeves, etc.

    You can find the board rules at the top of the page (blue line). We avoid contentious
    topics like religion and politics. Click on "Shop" if you want info about supplements.
    "Supplement News" has reports about developments; research; etc. There is a tool bar
    at the top of box where you type messages. You can change the font, add color, etc.

    If you click on a poster's avatar, you can get some info and pull up posts from the past.

    I have CFS; very little energy; was born during the Roosevelt administration. Thank
    goodness I've kept my stunning good looks and sense of humor. Understandably, this
    board is my social life.

    Feel free to ask questions. There is usually somebody with helpful info.

    Rock
    Alyssa-Admin likes this.
  3. Bet1941

    Bet1941 Member

  4. Bet1941

    Bet1941 Member

    Thank you for the welcome
    ️Hugs , Betty ⛄️
  5. Rabbitlady2

    Rabbitlady2 Member

    Hi Betty,
    I'm new to this site, too. I'm not new to fibromyalgia though - was diagnosed in 1993 - with symptoms many years before that -arthritis as well. I'm 67 and retired at age 62 from my full time college teaching, not by choice (too long a story, but see my reply to Hugo re his EEOC question if you want to get the brief version). I moved back to Michigan and was teaching part time, when my symptoms worsened, especially the pain and fatigue and quit teaching even part time in Fall 2013. I've now been diagnosed with CFS - pretty sure it would fulfill all of the ME criteria if I could find a doctor who'd even heard of it. You asked about symptoms progressing over time. I've noticed that through the years I can point to times when I've had stressful situations and/or infections which led to bad prolonged flares. In some cases I didn't quite recover back to the point I was before. So while I didn't notice a steady progression downward, it was like going down to a plateau, staying there for a while, then being pushed over the edge to the new lower level by the next crisis. In November I had a TIA, commonly called a mini-stroke, which put me down completely, and I thought I was going to stay that way. I have improved but I am pretty much housebound, and in bed when I am home, only going out for trips to the grocery store, drugstore, and doctors' appointments. I live alone, or I wouldn't do much of that either. At least I can do it now if I have to.

    You probably think I'd be depressed, but I'm not. I said I live alone, but I actually live with my two loving house bunnies. I currently use Daisy's picture as my avatar. She and Dudley were both adopted from a rabbit sanctuary, and are great cheer givers. But I'm also not depressed because I have hope. I understand what you mean about being a Christian, but it's not only my hope in the next life I'm talking about. I, too, do a lot of reading, and research on the web and I hope there will be a breakthrough, and/or that I could go on line and find a knowledgeable doctor to manage my case. But, ultimately some of that is beyond my control. So, although I'll still keep searching, and trying, the logical side of me tells me I may remain bedbound. And, that seems to be what you're questioning, too. For my part, I just refuse to believe that I will be doing nothing for the rest of this life. My hope is that I will find an occupation that will allow me to keep doing something even if I am in bed.

    By "occupation" I don't mean a job. I have a laptop which is set up on an inexpensive hospital type table, slanted over my bed in such a way I can use the keyboard and wireless mouse. I still continue to learn, and not just about possible treatments. But there are other things you can do, even in bed. I don't know how creative you are, but I design individualized greeting cards, and booklets and send them to my friends, using my own drawings or free photos and clipart from the web. Some designs and pictures I create for my own pleasure. I don't know what you can do on your tablet. I just finished doing a little bit of research for another friend of mine who's grandson has applied to and been accepted by the University of Tasmania, Australia - an excellent school, just a long way from Michigan, U.S.A. If I'm down, I sometimes explore topics or look at images of a place (like taking a tour) or an animal just for fun. (Go to the Bing "Images" site for inspiration. ) Some people are able to sew, draw, embroider, knit, crochet, gifts for friends, donations to charities, or even things to sell. I know that's going to depend on the pain in your hands - just giving examples.

    The good news for you is that anemia by itself can make an otherwise healthy person feel extremely fatigued, much less someone who has FM/CFS. Even with treatment, it takes a while for your red blood cell count to go up. Remember your other cells and tissues have been deprived of the oxygen carried by those cells and they have to come back, too. So you still have hope that you will have more improvement. I know I'm strongly affected by weather and the dark days of winter are horrible. If that's true for you too, then all this has happened at the worst time of the year, and you still could improve even more as the days get longer. So, while I hope my comments are helpful, don't assume that how you are now is how you're going to be, and then become the victim of a self-fulfilling prophesy.

    I hope you have a happier and healthier new year,
    Alyssa-Admin likes this.
  6. gb66

    gb66 Well-Known Member

    Hi to Betty and Rabbitlady, and welcome to the board!

    I am so glad to meet both of you. I hope you will stay with us and join in our games too.

    I've been homebound for many years, had CFS/FM for 36 years and have added a 'few' new ailments to the mix over the last 4 or 5 years, including diabetes 2 and low thyroid. also have MCS and OA. I only leave home for medical appointments.

    I will come back later and write more. I'm on my way to bed now as I've been fighting a bladder infection for over 2 months. I'm on my third round of ABX and still feeling pretty bad.

    I'll talk to you later. Hugs, and again, Welcome. GB
  7. Mikie

    Mikie Moderator

    Hi, Kids,

    Betty, we miss you on the Porch. Glad I found you here. I have probably had FMS all my life. In 1990, I got a mycoplasma infection and have never been the same since. That was the start of CFIDS/ME. By 2000, I simply could not get out of bed and had to file for disability. I was bedridden most of the time for a couple of years. I found this website and all the wonderful people here. I tried different treatments I learned of here and, slowly, I started to improve. I was able to go to work part time for a while but developed Sjogren's Syndrome and was bedridden again from the utter exhaustion. I found a doc who does peptide injections and they have been a God send to me. I am not in glowing good health but I can function pretty well.

    Rabbit Lady, your story is a lot like mine. I am usually not depressed either. I also live alone except for two kitties. I call my white one, Rabbit, sometimes. Like you, I have never given up and continued to try new things to get better. I spent hours researching my illnesses and the likely triggers. Read my note to Betty above. Yes, there is always hope. Many of us here have found some level of healing.

    If you are ever looking for some relief to get away from illness, just hop on over to the Chit Chat forum and drop in on the newest open version of the Porch (or Porch light). Many of us there are not bedridden but we discuss many diverse topics and support one another in many ways; some of us were bedridden so we understand it. We are all animal and plant lovers and some of us love to read. I think Rock reads more than most of us. He is filled with knowledge (and he is a world-class punster). One of our members lives in Nepal and provides us with a picture of what life is like there. I know when I was deep into research mode, I needed to get away to just chat with friends here. Betty, I hope you stop back in and, Rabbit Lady, I hope you will drop in to check us out.

    Love, Mikie
  8. Alyssa-Admin

    Alyssa-Admin Active Member

    I just want to say 'good on you' Rabbitlady2! I was diagnosed in 2008...had (yet another) car accident in 20 y07, with whiplash...although I have always had neck pain since I was a teenager, and some of the other symptoms. When the recession hit in 2008, my husband and I had our own property investment business. But, the mortgages for our investors crumbled, etc etc. My husband and I always have worked together...now he commutes 2 hrs a day to work. I am just very thankful he has work! For a couple of years I was very depressed (probably mostly to do with financial issues and the fact that we lost everything - bar the house - thank goodness for negative equity!!!). I literally hid in our bedroom, kept the lights off, never went near windows - I was paranoid about a lot of stuff....like sheriffs showing up at the door....but that was then and this is now.

    You know when you have a moment that ends up taking you down a whole other path? 3 Christmases ago I decided enough is enough, I want to get my fibro under control. So I downloaded an app specifically for fibro. Well, it was absolute garbage...the person who did this app a) had no concept of life with this illness (husband found that the same company had taken the same app and released it under a variety of different conditions names -so migraines - same app etc.

    My husband is a web developer, and I showed him how truly crummy the app I had downloaded was. And said, 'you know, I bet you could learn how to do apps, and make a really good one for fibro/cfs.'

    It took 2 years to build during nights and weekends, but it was launched last year and is helping a lot of people....I also co-authored a book for young families where the parent is the carer. The book has just gone into it's 2nd edition and is helping families adjust with a simple system.

    The thing is...I woke up one day and thought...I am going to take on the Bugs Bunny Attitude! If you can't beat'em, join'em! And now I have been asked to help out on here a bit, which is lovely! I also run a page on Facebook for the app and am admin on another Facebook disabilities page.

    And it has changed my life around. Yep. I am in pain. And I can leave my bed - It is just a heck of a lot more comfy not to! In fact, several of the people on my Facebook group meet up regularly or we have a meet once a year for everyone...

    The thing that really changed my life? I got the cd The Secret...and I would watch it and watch it over and over again on our tv in the bedroom whilst we were going to sleep. And when I would wake up in the middle of the night, I would play it again. And for me - it worked. I have my sparkle again. It just took a while.

    It is amazing, when you take on the 'attitude of gratitude' and the law of attraction...I have sure learned about focusing on the positive stuff - heck, I have a 5ft dream board that has pictures, requests, notes etc...and everytime I make a request and it happens (sometimes literally in minutes), I know in my heart that I am doing the right thing...I have gone from owning restaurants and catering companies in Canada to property investment here. And I am seeing that now is my time to start really hopefully making a difference in people's lives - one way or another.

    Oops. Apologies for the novel. I do tend to ramble on.... :) x
  9. rockgor

    rockgor Well-Known Member

    Hi Alyssa

    Congratulations on all the progress you've made. Hope you continue to feel
    better, and best of luck with your computer and literary efforts.

    Oh, yeah, re: ur last paragraph, it's not a novel. Novels are fiction. Ha Ha!

    Listen, you posted a message on the porch, volume 776. The porch starts a
    new thread every 30 messages, more or less. We are now on volume 778.
    So you might want to cut and paste that last message.

    I saw a T shirt earlier that asked, "What does an accountant do to liven up an
    office party?"

    No answer was provided, but I suspect on the back it says, "Goes Home". :rolleyes:

    Rock
  10. Alyssa-Admin

    Alyssa-Admin Active Member

    LOL. Ok on the porchlight stuff...great idea...I like that!!! And the joke...very, very dry wit there. :) but most likely true! My 2nd cousin is an accountant, and I only met him for the first time a few weeks ago. Thankfully....he was not boring, had a sense of humour and was a really easy going guy...so there goes my experience of all accountants being boooooooooooooorrrrrrrrrrrrrrrrrrrrrrrrring